Wenches with Polycystic Ovarian Syndrome

[Psyche]

I thought I would start a support thread for those with PCOS (Polycystic Ovarian Syndrome) since I know there are a few of us out there.

[Psyche]

I was diagnosed with PCOS in 2000, after laparoscopic surgery to remove cysts on my ovaries. I was put on the Pill then to try to help with the pain. It worked somewhat. Then I got married and we decided we wanted wee demon spawn, so I went off the Pill. I got pregnant right away and had a miscarriage a few weeks later. Now I can't stay pregnant and the doctors are blaming the PCOS. Well, some of the doctors. Because I am mainly seen at the VA (Veterans Affairs) Medical Centers, I end up seeing a bunch of different doctors, who all seem to have differing opinions. Some keep pushing for a hysterectomy to deal with the pain issue. Hello? I LIKE my hormones! And I am only 34. I am hoping to be put on medication that should help it instead of narcotics 15 days out of the month.

So basically I am grumpy, have labor each month when I ovulate and when the Curse hits, and have gained 85 pounds since August 2002.

PCOS sucks!

[jillian]

Wow. You poor thing. If I could donate mine to you, I would.

[Rose N. Crantz]

I'm still in the process of getting diagnosed with PCOS. I've had the symptoms forever and, hopefully, I'll soon find out what's wrong with me. I've gained 60lbs. in the last year, have to pluck thick, dark hairs from my face twice a day, have skin tags, and occasionally suffer from balding. As you can imagine, it's horrific to go through. I cry all the time to my rogue, who holds me and tells me we'll find a way to make it better. Recently, I've developed an awful *insert swear word here* pain on my left side once a month. I can't take the pill to help my weird periods because I'd had a blood clot three years ago. So...I'm at my wits end; drained; and just want to forget I even go through this.

I'm just hoping I'll have answers soon.

[Psyche]

*huge hugs* I have the most pain on the left too. It's like a knife twisting. *more hugs*

I understand the weight gain. I am the heaviest I have ever been in my life and I hate it! H.A.T.E. I.T. 90 up since August 2002. I got so mad when one of the doctors told me it was what I am eating. Asshat! I don't eat that much. Ask my husband. I do eat enough to keep my system out of starvation mode, but that's about it. Of course that doctor didn't believe me. Asked if I sleptwalked. :roll:

I am hoping that I will be put on Metformin/Glucophage at my next appointment (March 29th). *crossing fingers and toes*

I hope you get answers too... and me too.

[Psyche]

Some good sites for PCOS
http://www.pcosupport.org/
http://www.pcos.net/
http://www.soulcysters.com/

[Rose N. Crantz]

Thanks for the sites, hon. -huge hugs back- Doctors can be so dumb! I exercise & eat right too, but BOOM! more weight. -more hugs- Atleast we have company now! :grouphug:

[Holly]

hmm...
I am startign to get eh diagnosis for PCOS....
I am not able to take the pill b/c i get really sick and have HORRIBLE migranes....
I have to schedual my next appointment with DR to find our what we can do...
checkin on the links...

what is glucophage? isnt that a drug for diabetes? <type II>?

[Daelyn]

I have all the symptoms, and my really nice OBGYN has given me all the tests, but they all came back with a "no, it's something else, we have no idea what". I'm relieved and yet worried at this point. Can't take the pill... gives me horrible, constant morning sickness. blech. Then the endocrynologist tells me my pituitary has kicked back in, but "it's not much, it shouldn't bother you at all". Ignored everything I said, ignored everything my regular doctor said, and told me I'll be fine because it's not causing any real problems. Apparently thinning hair, weight gain, and abdominal pain (alternates sides) isn't a real problem. Some men should not be doctors for women unless they go through sensitivity and active listening training. *grumble* Oh well. At least I got a 1/4" taller, right? sigh.
*hugs to the PCOS sufferers* Hang in there gals.

[Cat]

:meow:

Well, I started having some probs around, oh, last Nov I think... I had 2-3 3-WEEK long periods in a row, with 1 week between each - now, I've always been irregular, but that seemed a bit much, so I got a gyn referral... joy fun, no appts until 2nd week of Jan... no biggie, things went a bit more normal in the meantime... though some of my prelim tests were a bit odd.....

So, she scheduled me for more tests and a pelvic US (2 weeks later) (not fun, especially when they decided they need to go trans-vag :ow: )... needless to say, I knew they found something by the way they were reacting.... a 6cmx6cmx5cm (approx) polycystic mass on the right ovary, according to the results (lol, and an apparently MIA left ovary, go fig).

Now, I was doing ok until then, but starting almost immediately after the US, I satrted having severe abd pains... on the left :? ... Follow up doc visit was one week after, and that was when (on a Thurs), she said "you're having surgery on Mon" (:shock:"uh, huh, what?" :? )

Lol, so then I got a CT scan of the area next day for pre-op. Doc called me that Sat - good news was, right ovary was fine, NOTHING there that wasn't supposed to be(:? :?: ok, I felt lost), BUT, my wayward lefty was found... complete with tumor :shock: (still never found out how big, though I was about 10lbs lighter when I got home from the hospital :thinking:)

Well, it all turned out pretty much ok in the long run, tumor and left ovary remove (damn, I'd hoped for the whole package to go bye-bye :snicker: :toocool:). Also, the tumor was non- cancerous :cheer: Next period was normal, and I might only have them every other month now, which is a minor upshot.... :haloslip: Oh, and the time off from work has let me make nearly every weekend of BARF until this coming one.... (meh, now I just need to recover from the breast reduction I just had last Mon - planned for months, talk about timing, recoveries ran smack into each other - and I should make the last 2 hopefully, but prolly not this weekend)

The thing that really sucks though, is that we still don't know what really happened, or if I'll have probs in the future....

[Psyche]

I just (today) started taking metformin (Glucophage) for my PCOS. I am at 500mg once a day and will be worked up to at least 1500mg. I hope it helps my symptoms. I had a cyst rupture this weekend and I never want to experience that pain again!

[Absinthe d'Accalia]

As a 'girly-problem' pro (endo, cysts, fibroids = partial hysto at 31), I've found that there's all sorts of things that docs know, think they know but don't, don't know but should, etc. It's a sucky situation to deal with.

If your doc is one who listens, perhaps ask them to check your progesterone levels. Many mainstream studies have linked low progesterone levels to miscarriages & preemie births. There's different progesterone creams out there (which can help with PCOS, endo, the higher-than-normal estrogen levels) - some are good, some aren't worth the cream they're mixed with. I've had good luck with Prolief, which is carried by Arbonne.

http://www.arbonne.com/product_pages/phytoprolief.html

I, being an odd redheaded freak gene person, tend to hold onto ALL estrogen that is ingested, be it plant, pill, plastics, whatever; versus most wimmenfolk, whose body slows it's natural production down with the introduction of a plant-based estrogen. I joke that I'm so oozing with femininity that's why all the estrogen in my system. :wink: So if any of you fellow wenches have the same issue, perhaps steer away from the Phyto-prolief, which contains phytoestrogens. Also, if you have that issue, perhaps look at the amount of soy you are taking in, as well as anything (high fat/fried, alcohol, red meat are the big top three I can think of) that will increase the estrogen your body makes. In addition, sometimes the traditional herbs like dong quai, black cohosh, raspberry leaf, etc., can be more of a detriment than a help.

If you can find a good acupuncturist, that can be helpful too. Just make sure they are willing to tinker, listen, fine-tune to what YOUR body needs, versus what is 'by-the-book.' I miss mine from San Diego a lot.

It definitely takes diligence, and is a pain in the patootie, but with the combination of Eastern & Western treatments, it can be dealt with, or at least made liveable.

[DangerousCurves]

I was diagnosed with PCOS in 2001, along with advanced endometriosis and a backwards uterus. For the longest time, every doctor I went to would NOT give me a referral to a specialist because I was so young (I'm 23 now) and they attributed my pain and irregularity to my age. When they finally got their $hit together and sent me to a specialist, my husband and I had about had it with doctors. They had me convinced that taking Percocet for cramps was "normal" for a girl with irregular periods. Finally, after several miscarriages, I went to a specialist. The man was a gift from God. He never scoffed and said I was over-reacting. He told me that it was NOT normal to feel like someone was poking me in the side with a stick as hard as they could...it was NOT normal for me to not be able to function for all the pain every month. I remember being CARRIED to the nurses office in high school (God bless the farm boys at my school) because I went down to my knees in pain and couldn't get up. He was the most incredible doctor. He not only found my cysts and the damage that the endo left in it's wake. He was the one who found my uterus backwards. He LISTENED to what I had to say. I was on the pill for a while and then managed to conceive a beautiful wenchlette and carry her to term. That was a miracle in itself. I also enjoyed over 9 months of pain free living, as pregnancy seems to cure endometriosis at least temporarily. I began again with the pain about a year ago (my daughter is almost 2). Unfortunately, my fave Dr. left for another hospital in my 5th month of pregnancy but I now see a fertility specialist who is also awesome. He didn't screw around with anything, he whipped out the "wand from hell" and gave me an ultrasound. There, big as life, were cysts the size of ripe peaches and fluid from cysts that had burst. He has been trying various and assorted methods of treatment, but now I have been on the NuvaRing for about 3 1/2 weeks and no pain yet! I don't know if I'm getting any new cysts but at least for right now, I can sleep without doping myself up. The best advice I can give: Find a doctor you trust.